Giving Patients an Active Role in Their Health Care

As payment and care delivery models shift in the United States from episodic, fee-for-service care toward population health and value-based reimbursement, health care leaders are focused more than ever on patient engagement as a key to driving down costs and improving outcomes. And yet, as so many of us know who have attempted to manage our own care or tend to sick family members, the U.S. health care system rarely feels like it’s been set up to help us succeed.

What’s needed is a fundamental redesign of the patient’s role — from that of a passive recipient of care to an active participant charged with defined responsibilities, equipped to dispatch them, and accountable for the results. In other words, we need to view the patient’s role as a job and then design that job in such a way as to drive the best health outcomes possible.

The Patient’s “Burden of Treatment”

Patient advocates and others who have studied the U.S. health care system have catalogued the degree of “unpaid,” and unsupported, work patients take on in service of their own care. The average, low-risk patient must follow up on referrals to specialists, fill and manage medications, and comply with physical therapy and other regimes. With legacy, pre-internet software systems still the norm in most hospital environments, patients also become unpaid couriers, shuttling critical health data from one provider to the next.

According to a 2015 survey on the patient experience, nearly 30% of patients physically carry x-rays, test results, and other critical health data from one provider’s office to the next. And 55% say their medical history is missing or incomplete when they visit their doctor.

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For patients who suffer from chronic or complex conditions, as a Mayo Clinic paper recently argued, the “burden of treatment” must be shouldered alongside the “burden of illness.” A 2012 study cited by the study’s authors estimated that the self-management of a chronic illness demands, on average, two hours of patient work each day — work that is often poorly supported, stressful, and frustrating in nature.

For all the articles advocating for “patient-centered care,” this is the change that we ultimately must be willing to make: Rather than having patients as passive recipients of care, they must be active producers of their care, in partnership and coordination with physicians and clinical staff. So what are the requirements for getting to that end state?

Account for Patient Work Across the Full Care Journey

First, we need to acknowledge and account for all the patient work that now goes unrecognized and unsupported. This means grappling with the complexity of tasks patients take on as they seek care across an ever-expanding number of settings — work that varies widely depending on acuity level, disease state, demographics, insurance type, socioeconomic conditions, and so on.

For years, hospitals and medical groups, looking to move the needle on patient satisfaction, have focused largely on managing and optimizing isolated episodes of care. CAHPS surveys, for example, which serve as the industry standard for measuring the patient experience, focus on patient satisfaction with individual encounters within a single institution.

But the way we access and experience care has changed. Where we used to have a lifelong relationship with a family doctor, we now switch doctors frequently due to scheduling issues, changes in insurance coverage, and other factors. We’re also more likely to seek care outside the walls of health systems or the boundaries of specific networks — whether it be through urgent care visits, virtual consults, or alternative therapies. And we know that much of what affects our health, for better or worse, happens between visits. Who is accountable for measuring the patient experience over time and across all of these disparate care settings?

As we shift toward population health, with provider reimbursements tied directly to improved outcomes, we need to move from managing episodes of care to managing the entire patient journey across the full ecosystem of care. The patient journey becomes the operational backdrop against which patients, physicians, and other staff and caregivers must play their respective parts.

Intentionally Design the Patient’s Job into the System

If the patient is to have a job in the care-delivery process, we must apply the same principles of intentional work design to their jobs as we do to those of physicians and clinical staff. In a recent Physician Leadership and Engagement Survey conducted by athenahealth with 2,000 doctors, we found that only 20% of doctors surveyed reported high levels of engagement in their jobs. Those who were highly engaged, however, pointed to a few key drivers: trust in leadership and the system, open communication and feedback, and an operationally effective work environment that allows them to deliver high-quality patient care. It’s not a stretch to suggest that patients would be engaged and motivated by the same drivers.

We know from classic management theory (e.g., the work of J. Richard Hackman and Greg R. Oldham) applied and tested in other service-industry contexts what good job design looks like. Well-designed jobs, for example, give individuals a clearly defined role to play with sufficient autonomy and regular performance feedback built in. This not only allows people to execute tasks effectively but also gives them a sense of meaning and satisfaction in their work by seeing the connection between their efforts and outcomes.

In contrast to this ideal work scenario, the roles and responsibilities of patients currently are almost never clearly defined or fully supported. Patients routinely take on frustrating tasks, such as the transfer of vital information from one provider to another, that technology should be designed to handle. They struggle to get access to the information they need to tend to their own care, and get little feedback or satisfaction from seeing their actions move the needle on results. For patients to be satisfied with care, motivated to play their part, attentive to required screenings, and compliant with care, they need the support of a system designed to help them do their jobs effectively.

Support the Patient through Network-Enabled Technology

Saying that the patient has a job to do does not in any way suggest that patients must shoulder the burden of their responsibilities unsupported. Technology is the key enabler of patients’ success, providing the information, visibility, and feedback they need to do their jobs.

So what does this look like? As part of its research and development efforts around population health management, athenahealth has begun the work of mapping out a series of patient journeys tied to distinct patient types. The goal is to understand all the key points of engagement that are needed in order to support the patient before, during, and between visits. Naturally, the patient journey and points of engagement look very different for a healthy 28-year-old than they do for a 55-year-old smoker with diabetes and hypertension. But both have jobs to do that can only be done effectively with the support of surrounding technology.

For example, data aggregated from a multitude of sources — from electronic health records to insurance data — can be used to paint a complete picture of the patient. Smart scheduling systems and patient portals help patients access care on demand. Reminders via text and other modes help the patient arrive on time and prepared. Open data exchange allows personal health information to travel from one provider or encounter to the next so the patient isn’t playing courier.

For high-risk patients, wearable devices and care management apps help them stay compliant and connected to care teams 24/7. Technology can’t do patients’ job for them. They still need to embrace behavior change and take accountability for their own care. But it can make their job easier to do, more likely to be effective, and more satisfying and rewarding.

It’s widely accepted that we will never realize the goals of health care’s Triple Aim — reducing costs, improving the health of populations, and improving the patient experience — without putting patients at the center of their care. To do this effectively, however, health care leaders must do more than retool old mission statements or retrain physicians and frontline staff. They will need to reorient their thinking to acknowledge the critical job of the patient, design it thoughtfully into new operational frameworks, and invest in the networked technology required to support it all. Only when patients, physicians, and staff are all working together, fully engaged and enabled to do what each does best, will we achieve the clinical and financial outcomes we are all aiming for.

Len Schlesinger is Baker Foundation Professor of Business Administration at Harvard Business School. He previously served as the 12th president of Babson College and the vice chairman and chief operating officer Limited Brands (now L Brands). He is the coauthor of What Great Service Leaders Know and Do.